Help! Reflux worse after fundoplication revision surgery!

Anyone out there???

I had my second fundoplication and HH surgery repair three weeks ago and I am having terrible reflux that wakes me up at night. I'm still on ppi's (20 mg omeprazole each day) and lots of gavisocn but that doesn't help a bit. I am really distraught and just can't understand why this surgery doesn't seem to be working for me. I can barely swallow either! The food (all liquids and soft) gets to that junction and then hurts when it tries to go through. Today is a really bad morning. I am trying to hang in there and hope this is a fluke but have been having reflux since just after the surgery. I keep telling myself it's all part of the healing process but I feel like I'm just in denial that this once again hasn't worked for me. The anxiety is definitely mounting for sure!

The first hernia repair and fundoplication (toupee) was in Mar 2010 and it never worked from the beginning either. My doctor just kept ordering more tests and telling me all was fine. I went back on nexium right after the surgery and still had stage 3 esophagitis after about 4 years. PPI's didn't work at all so I had to go back for another surgery. My hernia was still there, right after the first surgery too.

So, I found the best surgeon at the best hospital in Paris and even had the robot but so far, I don't hold out much hope that this is just all part of the healing. I have a huge lump in my throat, can't swallow, burning in the back of the throat, stabbing between the shoulder blades- all classic reflux symptoms. I should know, I've had this for more than 20 years. Been on ppi's for at least 17 years. I am so bummed.

Can anyone offer any words of encouragement?

Thanks,
Janice

Hi Linda Sue,

I saw my surgeon yesterday who told me I'll have to continue with the high dosages of PPI's for at least another month and possibly for the rest of my life. Since this was my second surgery, I don't really have any other choice except a gastric bypass which he says doesn't necessarily work either in my case. So, I have to take more PPI's than I did even before the surgery and just hope that somehow, the healing will continue and by some miracle, I won't have to take them any more and the reflux will go away. I am now exactly one month post nissen fundoplication. What was your situation?

Thanks so much for the advice, Bill. My food has been mostly soft food, whatever I can chew to a liquid before swallowing. I'm not eating much either. I'm a very small person and have already lost a size or two and my pants are falling off! The food does seem to be passing through a bit more easily now so I've started to adventure forth with some soft chicken and fish which seems to go down no problem. I'm still filling up very quickly so can't get more than about a half cup down at a time.

I'm really hoping that the reflux is all part of the healing and have heard that some people get it. Mine has been worse than before the surgery if that is possible! Now that I've been taking Nexium again at a larger dose, the reflux has become manageable, so to me, it seems that I really do have reflux. I'm going to try reducing my dose after another week or so and see what happens. How long do you think I'll be still experiencing this? My doctor told me another month or so.

Are you the one I read about that had a perforated esophagus?! You poor thing. How are you doing now? Are you living a good life, I hope? What did they do for the third nissen? Has that worked? My surgeon seemed to think I would have to go to the extreme gastric bypass if this doesn't work. Why did you need the third Nissen? Nobody knows what we have to deal with inside which makes it so hard, especially around the holidays with everything revolving around food.

Happy holidays to you and I thank you so much for your support. It really helps!

Janice

I'm now 2 1/2 months post my second fundoplication surgery and unfortunately still experiencing awful reflux and have had to take double the dose of nexium a day (40mg) just to make it through the day. I feel the reflux begins again around the end of the day and I have been taking a carafate thanks to Denises advice @Dencha, and a sleeping aid just to be able to sleep through the night. So, I feel like I can manage to get through the day but don't know if I can continue to take these drugs at these dosages for the rest of my life (I'm 54).

I've also incorporated any and all supplements that could help into my diet like DGL, aloe vera stomach formula,- before eating, and slippery elm lozenges which I take every night. I take magnesium for the anxiety and muscle cramps and try to eat foods with the highest nutrient content available. I'm also juicing regularly and drink that for breakfast, mostly vegetable juices including cucumber, celery, carrot, cilantro, beet, fennel, ginger. I juiced a purple cabbage and tried drinking that straight and it almost made me gag.

I go up and down with my morale. Some days I don't feel like I can go on like this, other days I accept my situation and make the best of it because I know there are people way worse off than I am. So, I look for the positive and just hope that one day I will wake up and my reflux will somehow be gone. I've also tried the low carb/paleo type diet before the surgery but since I can't tolerate any raw veggies (except in the juiced form) I can't do that diet yet. I still can't swallow a small pill yet without it getting stuck. I'm wondering what could have gone wrong with the surgery. I believe my hernia has recurred and the stitches did not hold so I'm back to having a very large hernia again, so diet is not going to play a huge role anyway. But, I do notice if I keep the sugar levels low, it's not as acute.

So, there you have it. This is my healing journey and unfortunately I did not get the results I was hoping for. The reflux is even worse now than it was after the first surgery. I just need support to help me continue to accept my life and make the best of it. I'm alive and that's what matters. I am very resistant to being addicted to drugs (ppi's) for the rest of my life. I just know instinctively that that is not in my best health interest. If I do find anything that seems to help, I will let you all know. I do chew on Dr. Ohira probiotics when I'm having reflux and that seems to help momentarily but not for the long term. Also, sucking on a small licorice tablet helps momentarily. I do sleep propped up on three pillows every night now and if I slide down, the reflux shoots up my throat and chokes me and I wake up gagging and coughing.

Sorry for the ramble but I feel like I need to get this out. It does help to know there are others out there suffering from the same thing. Why do so many of us suffer from this? Those PPI's are so addictive and like any meds, they stop working after awhile. I've been on them for 17 years and counting. Now, taking a double dose for the last 2 months which is barely keeping the reflux at bay. Just know that there is a chance the surgery may not be your answer, like in my case.....

Hi Trotters,
It means so much to me that you would respond and pour your heart our. It is nice to know that someone else understands what we're going through. When you put yourself through all the tests and undergo a very intrusive surgery, you are hopeful that when you wake up, you'll be better off than before. However, for us, that was not the case at all. I'll admit, it is very up and down emotionally. I just don't know how I will continue when these drugs I'm taking quit working. I've already doubled the dose and that doesn't really knock out the reflux. I'm still barely able to eat much and am already down to a size 0 in pants so there's not much smaller I can become.
No, I haven't yet had any additional test. My surgeon has ordered the barium swallow which I am putting off until after I go on a family vacation that was planned over a year ago. I live in France and am traveling all the way to Hawaii, via California where my parents live. So, I didn't want to have more anxiety before the trip and was planning to start all the tests again once I get back home to France. What did your barium swallow show? Does it look like the surgery has held and is in the right position? I can't imagine what has gone wrong with mine. Of course, for me it already was the second time around and the surgeon did warn me that it may not work but honestly, I wasn't expecting to be worse off than before. I'm still holding out a glimmer of hope that I'm still in the recovery phase and it may take more time for things to settle down and function properly.
For now, I have good days and bad days. I'm so sorry for you as a single, working mom. That is extremely stressful. My kids are grown and on their own now so I don't have as much stress at all as you do. You need some support. Do you ever do any yoga or have you tried meditation? How old are your kids? It would be nice to be able to have an actual conversation on the phone sometime if you were up for it. I do believe we can support each other since others just don't understand the misery we have to endure.
What is the Bravo test? I have been taking 2g liquid sulcrafate just before bed which seems to act as a blockage to the acid for awhile. Have you tried it? Sometimes it works for a good portion of the night (6 hours or so) and I manage to get a decent stretch of sleep which is soooo important in every way, shape and form to get through the next day and not be in a total fog.
Hang in there and I will do the same and if I find anything that might help, I'll share it with you and visa versa. I just hope for our sakes we can find some strategies that really deliver some relief.

Best of luck and please keep me informed of how your tests come out and what your surgeon says. I don't think we should ever give up seeking solutions and answers. At least that way, we continue to move forward and it's not hopeless. Feel free to moan and ramble as much as you like since I GET IT! And I definitely have sympathy for you if that helps at all.

Janice

Hello Janice

Thank you for taking the time to reply. Lovely message, thank you.

Well since my last message, I've received an email to say that my impedance test did indeed show reflux of acid and non acid and was advised to have Revisional surgery ..... Eeeekk. Full or worry and doubt and wondering if I'm doing the right thing. So scared like you say, that I'll end up worse off. I really hope and pray for you that you are still in recovery and that things settle down for you, I really do.

I don't blame you putting testing off. A break should do you a world if good. I know that being away doesn't make your synotoms disappear but a change of scenery definitely helps the old stress levels! Hope you have a wonderful time.

In answer to your question, my barium swallow came out "normal" and the wrap was clearly seen and appeared intact. The bravo test (capsule clipped into oesphagus that measure ph) showed very high alkaline reflux but I actually think the capsule fell off virtually as soon as it was put on due to the fact the reading was ph1-2 for roughy hour or so and then didn't drop below 8 which I think indicate that it was in my small intestine. To further confirm, the capsule... Excuse me for being revolting, made its appearance on the day it was still meant to be reading reflux. I insisted on the impedance as I just KNEW I had LPR and it is the gold standard for diagnosis.

How long did your first fundo last for? Did you have it performed in the U.K.?

Thanks for the advise re sulcrafate, I'll ask the gp.

Keep me informed of your progress and in the meantime I hope you have more good days than bad. Take care.

Hi

Thanks for your message. I don't think I am? I certainly don't feel like it these days, I creak walking! Interesting point though. I've just googled it. Its amazing how many different conditions, diseases and situations can lead to GERD.